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My dream is to hold hands and join forces with the Parkinson's community in Europe

Sherrie Gould

Parkinson’s pilgrimage: hiking the Camino de Santiago for stem cell research

Global update

Author: Almaz OhenePublished: 1 February 2018

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The Summit For Stem Cell Foundation is inviting the Parkinson’s community to join them on their Camino de Santiago pilgrimage hike to raise money for stem cell projects

The stem cell research organisation Summit For Stem Cell Foundation has raised US $5.5 million for Parkinson’s research – and is now aiming to raise a further US $8 million to see through stem cell transplantations in 10 Parkinson’s patients.

To help achieve the two-year fundraising target, the US-based foundation is inviting people from the Parkinson’s community to join them on their eight-day trek, from 3 to 11 October. This year they will be hiking the Camino Inglés, which is one of the least travelled routes on the Camino de Santiago pilgrimage trail in Spain.

Sherrie Gould, founder and movement disorders advisor, Summit For Stem Cell, says: “We’ve had 33 people sign up so far and have 27 spots left. We’ll have a bi-lingual English and Spanish speaking guide for every 10 people.

“We are really hoping that we’ll get people signing up to help our cause from Europe, as it’s right on your doorstep.” She says budgets for the trip are still being finalised, but the cost is likely to be US $1,500.

Sherrie is keen to stress that anyone participating with Parkinson’s must also have a ‘buddy’. The buddy will be responsible for their partner, assisting them if they need to stop or go home sooner.

This is the fourth trek organised by the Summit For Stem Cell Foundation. A team climbed Mount Kilimanjaro in 2011 and reached base camp at Mount Everest in 2013.

The Summit For Stem Cell team at basecamp, Everest

In 2016, we reported on how the Summit team, with the help of guides and pack horses, hiked for more than 30 miles over seven days to the summit of Machu Picchu, Peru – raising over US $120,000 in funds for research.

She says those who sign up for the hike will receive regular email updates with advice on how best to train and prepare themselves. “People will be able to see how many miles we’re doing and they will have a whole hiking schedule. My dream is to hold hands and join forces with the Parkinson’s community in Europe.”

The project began in July 2010 when medical professionals from The Scripps Research Institute and Scripps Clinic, San Diego, CA, and the Parkinson’s Disease and Other Movement Disorders Center, La Jolla, CA, collaborated on Parkinson’s research using stem cells. Extensive funding was needed to support clinical trials.

The organisation has since raised millions of dollars, with 97% of all donations going directly to research. They are able to keep overheads low as everyone working for the organisation does so voluntarily – apart from the scientists carrying out the research.

Carrying out research

Sherrie says: “We have catheters that we want to use to transplant the cells into the brains of our patients. So, right now we’re testing those catheters in a petri dish. We must wait for approval from the US Food and Drug Administration (FDA) approval before clinical trials start, but we are hoping for early 2019.”

The Summit For Stem Cell Foundation is part of a collective called G-Force PD, which involves five of the leading stem cell research teams from Europe, Japan and the US.

Sherrie says: “The whole concept of the group is for people to get together and just discuss problems. You know, people are coming with solutions, as a team we learn from each other, we discover how we can help each other and discuss the roadmap to the clinic.”

IN THE NEWS

A study published in the ‘Journal of Clinical Investigation’ has suggested mechanisms that lead to Parkinson’s in adulthood, may begin much earlier than previously thought. The study, carried out by Northwestern University, Illinois, US, researched movement disorder spinocerebellar ataxia type 1 by genetically engineering a mouse to mirror the human disease. Researchers found that altering circuity in the cerebellum – an area of the brain that controls movements – set the stage for later susceptibility to neurological disease. Professor Puneet Opal, who worked on the study, said: “This is the first discovery of alterations in an adult-onset spinocerebellar disorder that stems from such early developmental processes. “This may well be generalisable to a whole host of other diseases, including Alzheimer’s disease, Huntington’s disease, Parkinson’s disease and amyotrophic lateral sclerosis.”

Global Kinetics receives vital funding

Australian-based health company Global Kinetics has received a $AUS 7.75 million investment from the Australian Federal Government’s Biomedical Translation Fund. The investment will be used to commercialise its Parkinson’s KinetiGraph – a smartwatch-style device that continually tracks the involuntary movements of those living with the condition. In addition to the sum from the Australian government, Global Kinetics also announced they are to receive a grant from The Michael J Fox Foundation, Shake It Up Australia Foundation and Parkinson’s Victoria. Mark Frasier, senior vice president of research programmes at The Michael J Fox Foundation, said: “The experience of Parkinson’s varies day-to-day, hour-to-hour. An objective tool, such as the wearable PKG technology, that passively collects data on the experience of Parkinson’s disease could give patients and their doctors greater insight to calibrate treatment plans and improve outcomes.”

Smartphone app detects severity of Parkinson’s symptoms

A smartphone app– created by researchers from Johns Hopkins University, the University of Rochester Medical Centre and Aston University – can detect the severity of symptoms in people with Parkinson’s, according to a recent study. The study, which appeared in medical journal ‘JAMA’, found that the HopkinsPD app generated severity score levels which strongly correlated with standard movement tests given by physicians. HopkinsPD is expected to help medical professionals analyse Parkinson’s symptoms. Dr Ray Dorsey, neurologist at the University of Rochester, said: “Until these types of studies, we had very limited data on how people function on Saturdays and Sundays because patients don’t come to the clinic. “We also had very limited data about how people with Parkinson’s do at two o’clock in the morning or 11 o’clock at night because, unless they’re hospitalised, they’re generally not being seen in clinics at those times.”